Tag Archives: Amelia Solkoff

Dr. Jeniffer Simon, a caring and experienced urologist, Geissinger Medical Center, State College PA showed me on her computer this image–a cancerous tumor surrounding my right kidney, referring me to Memorial Sloan Kettering Cancer Center in New York City. “Unless you have surgery quickly, you will be dead in 10 years.” The date: April 5, 2013, 4 P.M. We hugged; I cried.

The order of this posting (typically presented in a hodgepodge of disorder):

I first came across this seemingly contradictory expression when trying to learn Latin:Festina lente.

Unless one is in a situation such as mine, Make haste slowly appears to make no sense.

Speed and slow are opposites.

The last part of cancer therapy

My situation comes at the end of a difficult time.

The time began in April when I was diagnosed with kidney cancer and reached medical optimism after I left my home in State College, PA where the expertise to save my life did not exist.

My first “step” in getting to New York.

I was referred to Memorial Sloan Kettering Cancer Center in New York City—a five hour car ride away. On August 8th, Dr. Paul Russo removed the cancerous tumor, saved my right kidney, and essentially prevented me from dying of kidney cancer. It was a gift of 10 years.

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In The Canary Murder Case by S.S. Van Dine, Philo Vance—almost certainly the most obnoxious snob in the history of detective literature—is helping his friend the district attorney solve a difficult murder. The district attorney says, “’Well, well! So the case is settled! Now if you’ll but indicate which is the guilty one, I’ll arrest him at once, and return to my other duties.’”

“’You’re always in such haste,’ Vance lamented. “Why leap and run? The wisdom of the world’s philosophers is against it. Festina lente, says Caesar; or, as Rufus has it, Festinatio tarde est. And the Koran says quite frankly that haste is of the Devil. Shakespeare was constantly lamenting speed. ‘He tires that spurs too fast betimes.’”

Still from the 1929 film version, The Canary Murder Case

Vance, whose name in 1927 became synonymous with private detective, goes on to quote Moliere, Chaucer and the Bible on the subject.

My energy level is sufficiently low and my acuity high enough I understand Vance’s point without citing the additional paragraph.

Paraplegia

For the past 20 years, I have been a paraplegic unable even slowly “to leap and run.” Paradoxically, in high school I received a letter sweater for running 2 ½ miles regularly during cross-country competitions. My best record was clocked running two miles in less than 12 minutes, hardly the Olympics, but good enough for Cheltenham High School in Wyncotte, PA.

Yes, I would like to leap and run. There are a lot of things I would like to do that I cannot.

What I want to do is live life to the full and in the process make a contribution along the path I have committed myself.

I certainly have done a lot of living in the past 20 years as a paraplegic. In one of my three trips across the United States from sea to shining sea, I took my battery-powered scooter and drove it around the rim of the Grand Canyon.

In California, I watched my elder daughter Joanna train a horse to jump a fence. As I watched, the horse did something amazing. After going over the fence for the first time, the horse did a double-take, shaking its head as if to say, “I do not believe I did that.” Joanna’s smile of accomplishment…

In Santa Cruz, one glorious day, Amelia my younger daughter and I boarded a ship and watched whales frolicking.

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Isadora Duncan

For a while, I chose the Isadora Duncan School of Dance rather than rehabilitation–both dance and physical rehabilitation have become an essential part of my doxology.

The brilliant physical therapist Alicia J. Spence at State College’s Phoenix Rehab begins; it is time for me to return to her.

In the Silicon Valley, I wrote a technical manual for KLA-Tancor on inspecting silicon wafers for defects. Often, I scrubbed down, putting on a white gown and hat; wheeling into the clean room where my readers would be using the documentation.

The recollection of previous cancers

After radiation treatment for cancer, I fathered my two children, published three books, and loved and was loved in return.

The experience of having cancer twice, first at age 28 then at 42—treatment which burned my spine and made me unable to walk certainly slowed me down. It did not stop me. Nor has the experience of having cancer for the third time at age 65 stopped me.

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“The Roman historian Suetonius… tells that Augustus… thought nothing less becoming in a well-trained leader than haste and rashness, and, accordingly, favorite sayings of his were: ‘More haste, less speed’; ‘Better a safe commander than a bold’; and ‘That is done quickly enough which is done well enough.'”

Wikipedia continues, “Gold coins were minted for Augustus which bore the image of a crab and a butterfly, which was considered to be emblematic of the adage. Other pairings used to illustrate the adage include a hare in a snail shell; a chameleon with a fish; a diamond ring entwined with foliage; and, especially, a dolphin entwined around an anchor. Cosimo I de’ Medici, Grand Duke of Tuscany had festina lente as his motto and illustrated it with a tortoise with a sail upon its back.”

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Frequently, I suspect I have not learned from experience.

The same mistakes seem to repeat themselves in predictable order. This is most often the case with loss of energy. So often have I felt my body filled with power and enthusiasm that when the power disappears and getting out of bed becomes a chore, a dark cloud seems to hang over me.

The cloud is not there now.

Recovery from surgery has surprised me by its slow pace.

When I returned from New York in August, the combination of weakness and pain made me grateful to be alone.

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One consequence of my receiving a cancer diagnosis in April of this year is that the telling provoked waves of affection and attention not merely from those close to home.

A woman whom I had loved intensely in 1972 ( not seen or heard from since) read here on this site an optimistic account of my situation and responded with an e-mail followed by phone calls. We talked about the children we did not have together, the life we did not share, and the strangely odd and encouraging fact that affection untended continues despite the reality that it had its origins so long ago.

Friends appeared with whom I had lost contact for decades. My expectations of how good people could be to me were vastly exceeded by reality. I have emerged from surgery with the feeling of being cherished. Nothing I can say or do can ever repay my gratitude. You know who you are and yet you do not truly appreciate how much you have graced my heart.

Often I feel words used to describe me are wrong, just wrong. I do not think of myself as “brave” or “courageous” or a “fighter.” When I think of myself, which I do often, I try to stop—meditate and in my own fashion pray that the ego will dissolve and I will just continue, pursue the path.

Optional isolation

Late in August, back at my apartment, alone, feeling that strange happiness that comes when intense pain disappears, whoever I am is comfortable to me. By nature I am impatient. By nature, I am persistent. Then, the phrase make haste slowly serves as a comfort. I will do what I need to do when the time comes. I will be grateful for energy and understanding when I cannot do what needs to be done. If the sky falls and I do not have the strength to stop it, the sky falls. Such is life.

Joanna’s wedding

Three months before I scooted Joanna down the aisle, she drove me to New York for the surgery. My friend Ben Carlsen drove from State College to New York to bring me back home.

Going to Joanna’s wedding in October appears now on the second day of December a miraculous event. Weeks before I boarded the plane, I did not believe the energy would return. I persisted. Giving away my elder daughter on a farm in Mebane, North Carolina produced euphoria that brought me through and carried me home on Delta Airlines.

Amelia (right) was my caregiver at the American Cancer Society’s Hope Lodge in NYC where we roomed together before, during, and after my surgery.

At the wedding it was a delight seeing Amelia again in North Carolina a seeming aeon away from New York , saying goodbye before she returned to Spain for her third extended trip.

I loved:

Watching my sister Sarah Leah Schmerler dance without inhibition after the intensity of being together at the hospital in New York

Seeing his father Robert Simonson who had lugged my mobility devices around the Island of Manhattan

My son-in-law Jade Phillips and his firefighting colleagues who, when the festivities were over and the bonfire burned out, literally picked up my exhausted body and flung me into the passenger side of a truck

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Then fatigue. Delight in being alone. Concern I would not finish the work I must finish. Optional isolation. Appearing outside my apartment only occasionally. Seeing as few people as possible. Avoiding crowds, large gatherings, and familiar places where I have been surrounded by affection.

Periodically, I receive calls, visits, e-mails and reports of those who ask with affection and concern “Where’s Joel?”

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Life continues.

A dear friend becomes sick. Miles and often even a few blocks I do not have the energy to travel keep me from being where I would otherwise like to be.

I sit in my apartment and wait. A rush of energy and I find myself writing, as I am writing now, without stop, expressing while leaving dishes unwashed, my bed unmade, not yet able to complete rigorous academic writing—not quite able to pull together a large project.

Instead, I follow whim. I have been making You Tube videos—going off to a computer in the patient company of an expert in iMovie editing software, collapsing, returning, making slow steady progress as bills pile up, consistently refusing to think about the money I do not have and the energy I do not have to obtain it.

I have been reading Robert Alter’s The Book of Psalms, his introduction tracing the psalms’ origins back to the Bronze Age over 3,000 years ago, reciting his clear translation, going to the Hebrew, recalling my mother never left the house without a small Hebrew copy of Psalms in her pocketbook, dipping into David Halberstam writing about Elvis Presley, reading a paragraph here and there about architecture, engineering, virtual reality—not doing much for long, but doing and then in fatigue watching by choice vapid Netflix videos for hours.

The last part of cancer therapy

I hope to encourage others like me who are recovering to recognize our temporary limitations and persevere.

Most do not recognize the difficulties involved in recovering from cancer after the disease is gone but the energy has not returned.

While researching, I came across a footnote in a medical journal article. A young man with the most dangerous stage of Hodgkin’s disease had killed himself after being cured. The autopsy revealed no cancer was present in his body.

Surviving while still recovering can be a hard time unless one is willing to believe in the future. Henry David Thoreau should be an encouragement to those us living in situations such as the one I am now in. Thoreau wrote, “There is one consolation in being sick; and that is the possibility that you may recover to a better state than you were ever in before.”

My life seems to have been lived on the principle that best way to get from here to there is NOT to go in a straight line.

I have been watching You Tubes of Edward R. Murrow, my hero. This one caught my fancy yesterday at 2 in the morning.

This I believe

I believe:

I am alive for a purpose.

The attempt to achieve the purpose, which I choose to call my path in homage to Laozi, serves not only its own end but to unite all that is sacred to me; namely, my children (of course) who are adults and have lives of their own; my sister Sarah and my family, my friends who are family; my love for women (a woman were the right woman in my bed); the need to care for myself, be independent in body and mind, be a good citizen who embraces not only my country but my mother Earth, and the need to be the human being I strive to be who believes in the spirit that gives us life.

Clearly a fictitious image of Laozi. No one knows what he looked like. The story is Laozi appeared at a border crossing. The guard asked him to write a book of wisdom. Laozi wrote The Way (The Path), gave it to the guard who allowed him to cross. Laozi disappeared. This story and The Way are the only evidence of his existence.

3. My chosen path is to help the elderly and disabled achieve their potential.

4. Along that path is the virtue of technology which makes it possible for me to go seamlessly from my bed to my kitchen out the door and into the world on scooters like the kind that my dear friend Al Thieme of Amigo Mobility invented which he refers to as Power Operated Vehicle scooters or POV scooters to distinguish them from toys. The technology mobility path includes power chairs and equipment being developed at an astonishingly rapid pace. The consequence of this technology is I do not think of myself as one whose disability prevents me from living life to the full. For individuals with hearing and visual disabilities technology has developed to the point where, for example, an individual blind from birth can drive an automobile specially equipped with laser scanning of the road; the automobile provides the driver computer-voice simulated operated instructions.

Totally blind drivers have passed tests on intentionally difficult driving courses. I believe in my lifetime the Commonwealth of Pennsylvania will issue drivers licenses to individuals who are totally blind but who have proven their ability to drive sophisticated vehicles such as the ones already produced by the Virginia Tech’s Robotics and Mechanisms Laboratory.

Amigo Mobility manufactures this narrow travel scooter shown here in a tight space in a tiny motel room as I traveled nearly 1,000 miles to my daughter Amelia’s college graduation.

5. My path is focused on what the architectural, engineering, and construction community refer to as the built environment. See, for example, my biographical information and published work for e-architect: http://www.e-architect.co.uk/editors/joel-solkoff

6. To rebuild the environment, the promise of virtual reality is real. Virtual reality is a promise my 30 year-old mentor Sonali Kumar introduced to me as I worked with her as a research assistant at Penn State’s Architectural Engineering Department to complete her doctoral dissertation entitled: Experience-based design review of healthcare facilities using interactive virtual prototypes.

Sonali apologized when she used me as the model for this avatar. “I am sorry I put so much gray in your hair. You do have a lot of gray in your hair.”

Fashion aside, one of my contributions to Sonali’s animated three-dimensional model of an independent-living-aging-in-place home was the suggestion she replace the original bathtub with a roll in shower. As a paraplegic for whom being clean is vital, I have all too often been trapped in a bathtub–on one occasion it took me 45 minutes to figure out how to get out of the tub finally using my arms to push me out, pulling my legs after me as I landed onto a dirty bathroom floor.

7. Experienced-based design is essential. Experienced-based design is one of a number of academic terms meaning the best way to design an environment is to ask the person who will use it. The example that comes most readily to mind is an article I read about a new hospital in the Philadelphia area. The article complemented the hospital administration for asking patients at the previous facility what changes they would suggest making to the design of the new building to make the hospital more patient-friendly. The patients suggested making it easier to get from bed to bathroom by making the bathroom closer to the bed. The article praised the administration for the reduction in falls as a consequence. [I know. My instant reaction to that was Daaaaaaaaaaaahh.] Asking does matter. Ask experts like me, for example, or my neighbors at Addison Court (an independent living apartment building for the elderly and disabled) whom I arranged to view Sonali’s model wearing 3-D glasses at Dr. John Messner’s Immersive Construction Lab for Construction industry. The consequence is we have the experience to instruct the design of the environment around us so that it is more efficient. The result is not merely an exercise in odd-sounding academic words such as case studies, scenarios, and activities of daily living (ADL); it is also a good idea.

8. Self reliance should be encouraged. Shown here

[Note: Think of I believe in points 8, 9, and beyond as Coming Attractions.]

9. Knowing when to ask for help.

Color coded socks at Mount Nittany Medical Center, State College, PA. These socks indicate patient is at risk of falling.

I do not feel real. There is a disconnect between my body, which does not feel good, and my mind, which does not feel good.

It is six in the morning. I am listening to Chopin’s Nocturnes; I am beginning to be not unhappy, but capable of realizing happiness will come.

My body feels as if it were hit by a Mack Truck—a brand new red truck exactly like the one friend Philip Moery and I saw just as it was driving off the assembly line lot–packing tons of raw power, initially a frightful yet beautiful sight.

All right, maybe the truck that hit me wasn’t red, but it still hurts.

Everything hurts.

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The fact that everything hurts is mitigated by the fact that I am no longer in excruciating pain the way I was two weeks ago.

The pills helped but not enough.

I took more pills and they did not help enough.

The pills caused my gastrointestinal system to go on strike—descriptions I will spare you.

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Yes, I realized my life had been saved as a consequence of the successful operation that not-so-appreciatively was making me wonder at my sanity to willingly submit to the aftermath of this surgery. Grappling two contradictory thoughts in my medicated head: The first was: I am glad to be alive. The second: I wish I were dead.

The glad to be alive prevailed throughout but sometimes only by a hair.

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Now, I am back at State College PA where I live. When I was in New York thinking about State College, I was in dread. The number of procedures required to get from there to here seemed overwhelming. Who, I wondered, was going to take apart my rear wheel drive scooter, my travel scooter, and my wheelchair and put them in the car?

At every step [sic] of the way, there were how-to-get-home questions ultimately only I could answer.

Dewy-eyed optimists might say that my problem solving was commendable because it was helping me reach my goal of saving my life.

Devastated, late in August, the problem-solving took on a distinctly unhappy feel. The problems had to be solved. I did not want to solve them. I had no choice.

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Upon arriving at State College, I was so relieved to be home. I had worried that everything with be dirty and a mess (on target), but it did not matter.

I no longer needed to receive permission to go to the bathroom and follow the American Cancer Society’s Hope Lodge rules requiring that I not bring my coffee from the common kitchen to my room.

Now, I can drink coffee as I type this and go to the bathroom without the nurse’s saying, “No.” No nurse. No No. Alone at last.

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Who am I alone? I am a 65 year old paraplegic (an active paraplegic) recovering from major surgery. It will take me two weeks more to recover to the point where I feel alive, an explication I will reserve.

I do not want to see other people. Slowly, I am emerging from this hermitage—going across the street for a quick Mediterranean plate with extra baba ganoush, inviting my friends to see me one-on-one and for a limited time only.

My body is not working well but is getting better. The key barometer to my well-being is the ability to transfer. Before surgery, I leapt out of bed and onto the wheelchair effortlessly.

Now, getting to the wheel chair is harder.

I do not fall.

I am weak.

While I am getting stronger, I really do not want to be outside home much until I master this key factor in being able to take care of myself, viz. transferring as effortlessly as before August 8.

It is happening.

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In some ways, I am surprisingly patient with myself.

Take for instance transferring from bed to wheelchair.

I methodically bend down and double check the wheelchair is locked in place.

When I put my left foot on the floor, preparing to swivel into the wheelchair seat, I check and double-check every move.

The consequences of falling; indeed, of falling frequently, is straight to the nursing home—the county home called Centre Crest; I do NOT want to go there.

Part of me is mindful of consequences.

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Before I discuss my emotions, which is the primary cause of my writing this posting:

The rank of football-rally-style cancer optimists is distressingly high.

Two apartment buildings where cancer patients recover or die are named Hope Lodge and Miracle House. I would prefer to have my conversations about hope and miracles with God and not rely on some seemingly uplifting name to keep my spirits up.

This may be one of many unfair observations, which I will not spare you now or later.

Hope Lodge is run by the American Cancer Society and through its generosity provided my caregiver younger daughter Amelia had a place to stay when I was in the hospital and where she could be next to me when I returned to recover.

Hope confronting me everywhere….

One consequence of cancer survivor ebullience is the: Make every day count mantra.

The first every day I was somewhat functional upon my return, I had to fill out overdue forms–lots of forms from trying to obtain money to ensuring my continued employment.

Forms. Forms. Form

Every day I filled out forms I asked myself, not entirely ironically, whether I had survived cancer to fill out forms.

Yes, I realize that after I fill out enough forms, I can scoot to the florist on Allen Street and smell the yellow roses.

This time, I prepared to protect myself emotionally and to provide my caregiver(s) with relief, orchestrating pleasant things to do.

Elsewhere, I may detail the preparations. Right now, trust me. I worked long and hard on emotional preparation.

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The big surprise to me is that I went crazy after the operation rather than before.

The craziness took the form my issuing barking mean and aggressive orders at my two caregivers, my daughter Amelia and my sister Sarah. I was polite to strangers.

The craziness reminded me of the time 20 years ago at the advice of the Chair of the Oncology and Chair of the Neurology Departments at the Chapel Hill Hospital for the University of North Carolina.

United in their decision both Chairs decided to put me on high doses of steroids to see whether they might restore my ability to walk. They did not think it would work and said so. However, steroids were the “miracle drug of the 1950s” and sometimes steroids have unanticipated positive consequences, so: “Why not? We have nothing to lose?”

Except my mind. I found myself saying terrible and abusive things—words I did not mean and knew I did not mean even before they formed on my lips, but words I was powerless not to utter because THE DRUG MADE ME DO IT.

Last week, I asked a secretary at the Department of Architectural Engineering whether she had a similar experience. “Yes, when my kids were born. I said awful things to my husband. Awful awful things.”

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The craziness appeared in the middle of the night as I was lying in my hospital bed, coughed, and my body felt as if it were split in two.

The craziness appeared as a wave—a fluctuating wave increasing in intensity until it reached a high and unpleasant peak before returning me two days later to reality shaken, not quite mindful of what I had said except that it was THE WRONG THING TO SAY.

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My sister Sarah told me on the phone on Thursday her feelings about me when I was crazy. “I knew that you were suffering. Yet you were mean and impossible to be around. I decided I never wanted to see you anytime again soon. If I saw you at your funeral, it would be too soon.”

Daughter Amelia asked: “Why were you so mean to me?”

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The expression I am in the dog house comes to mind.

I was crazy.

I was out of my mind.

I did not realize what I was saying when I said it and I did not mean what I said.

Of all my many preparations for surgery–including signing up for Premium Spotify [worth it]–creating a valid Living Will exercised far too much time.

I can and may list the valid rationale for having a Living Will, which here in Pennsylvania is called officially a Durable Power of Attorney.

Durable means (as lovers of the English language are encouraged to deplore) limited.

The person selected to execute my living will can only take care of my health care decisions–decisions I have listed in advance (see below) and which She, as it turns out, may only make following my explicit instructions (see below) and is not allowed to vary from my instructions at all.

My agent does not have authority to act for me for any other purpose unrelated to my health care. All of my agent’s actions under this power during any period when I am unable to make or communicate health care decisions have the same effect on my heirs, devisees and personal representatives as if I were competent and acting for myself.

To tell the truth, I would much rather watch a Shania Twain video than go through the gut-wrenching process of picking the person who will turn off the plug if I emerge from surgery a rutabaga.

Here is the video I would rather see than execute a Living Will.

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The problem with going into surgery which I knew would be successful (and indeed the surgery was successful) was encountering flak from a variety of sources.

One of these sources was my elder daughter Joanna, who has two honor degrees in nursing and is convinced–perhaps rightly so–that she knows everything.

Joanna insisted that she be the one to pull the plug.

In April I had had the foresight to executed a previous Living Will at my hospital bed, but once out of bed and back and forth to New York for reasons I will not explain (or may) I had to change the document.

For one thing, the April Living Will made the assumption that it was unfair to ask my daughters to perform such a task; my friends would spare them the guilt of pulling the plug. This assumption was wrong and in a way I cannot quite describe demeaning to them.

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In preparing for August surgery at Memorial Sloan-Kettering with the Living Will, I thought I was just going through the motions.

Then. Joanna said, “[Expletive deleted] I am a nurse. If anyone should pull the plug it should be me. Anyway, I would not be pulling the plug. I would be telling someone else to pull the plug.”

Meanwhile, my friend Pinhas had complained that in April he had been made second in line to pull the plug and wanted to be first; plus, my April number one batter up was afraid she did not have the medical knowledge.

Finally, Memorial Sloan-Kettering Cancer Center required (actually requested–it is optional) an updated Living Will plus other relevant documentation I will bother you with.

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My wishes. Clearly, some of my wishes did not matter at all. Others did, but not now–meaning not before August 8th and my kidney operation.

The primary reason I was filling out a Living Will was because I wanted to please the Administrators at the hospital where I was about to have surgery. If they saw that I was a responsible enough citizen to fill out the expletive deleted form, they would decide I was a right guy, guaranteeing some slack later when I behaved poorly–as I did.

I really and truly did not want anyone to take the document seriously. It was one of a list of items on my clipboard, the least important, and one that took up attention from more important things (which I will list for you eventually, but can be summed up with this video from Bessie Smith) :

Here is a salient excerpt from the Pennsylvania Living Will form, which is a lot simpler to fill out than you might expect:

If I have an incurable and irreversible (terminal) condition that will result in my death within a relatively short time, I direct that:

I be removed from any artificial life support or any additional life-prolonging treatment. ______ my initials

I not be artificially administered food and water, realizing this may hasten my death. ______ my initials

I not be provided any comfort, care and relief from pain, including any pain reduction medication, if the effect would be to prolong my life. ______ my initials

If I am diagnosed as being in an irreversible coma and, to a reasonable degree of medical certainty, I will not regain consciousness, I direct that:

I be removed from any artificial life support or any additional life-prolonging treatment. ______ my initials

I not be artificially administered food and water, realizing this may hasten my death. ______ my initials

I not be provided any comfort, care and relief from pain , including any pain reduction medication, if the effect would be to prolong my life. ______ my initials

If I am diagnosed as being in a persistent vegetative state and, to a reasonable degree of medical certainty, I will not regain consciousness, I direct that:

I be removed from any artificial life support or any additional life-prolonging treatment. ______ my initials

I not be artificially administered food and water, realizing this may hasten my death. ______ my initials

I not be provided any comfort, care and relief from pain, including any pain reduction medication, if the effect would be to prolong my life. ______ my initials

Regarding item 1, I answered: “I be removed from any artificial life support or any additional life-prolonging treatment“

Item 2, I answered: “I not be artificially administered food and water, realizing this may hasten my death.”

Item 3. I answered: “I be removed from any artificial life support or any additional life-prolonging treatment.”

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Time for another video:

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The PA Living Will form states what I told the form I wanted. Period. See:

“My agent’s powers include, but are not limited to:

“Full power to consent, refuse consent, or withdraw consent to all medical, surgical, hospital and related health care treatments and procedures on my behalf, according to my wishes as stated in this document…”

Other language makes clear: My Agent has no choice but to pull the plug because that is my wish as stated in this document.

The fact that none of my would be agents realized that they had no power at all to effect my major decisions was of no concern to them. What was of concern to them was my welfare. They love me. They want what is best for me. Instead, I had to spend time explaining this expletive deleted stuff to them and the more I explained the more frightened they became until, naturally, a discussion began about my funeral. [I do not want a funeral; I want a Democrat elected governor of Pennsylvania next year.]

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Perhaps a photograph unrelated to anything might prove useful here:

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Naturally, the situation became complicated. Naturally, for me. Naturally, for the situation.

I was preparing for an operation in New York on August 8th. Why was I worrying about a durable power of attorney in Pennsylvania when the operation was happening in New York AND Memorial Sloan Kettering requested I provide a valid New York State form?

Not the same form, of course. That would be too easy. The New York State form is entitled, “A Health Care Proxy.” The proxy delegates someone to be my health care agent: “In the event I have been been determined to be incapable of providing informed consent for medical treatment and surgical diagnostic procedures.”

Enter a useful attorney whom we will call Hadley V.Baxendale, a moniker he likes. Hadley had three recommendations:

1. Since I live in Pennsylvania and have been hospitalized several times in this Commonwealth, a valid PA Living Will is a good idea.

2. The New York form is limited in stating explicitly the powers an agent can have. Link the two documents for New York so the New York agent is required to follow the more detailed directives in the PA form–having the two notarized together which I did at the American Cancer Society’s Hope Lodge where I temporarily stayed before and after the surgery. I handed that two-in one document in on Surgery Day to someone entirely covered in white who said, “Thank you. I will put it in your folder.”

3. Hadley said, “There is room in the PA form for additional instructions. Let me begin by asking you the following questions.” I minded answering each question. The Aristotelian/Talmudic logic behind legal–especially good legal–thinking drives me crazy. So, I had to answer how much of a vegetable I was willing to be before I was willing to have someone pull the plug. What percentage of postoperative disability I was willing to take. And other tranquil questions designed to put me in the mood for surgery.

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Time for another song.

http://youtu.be/QwIYrx6Bqe0

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The upshot was that because they were actually present and available my younger daughter Amelia and my sister Sarah Schmerler were designated NY Health Care Agents for me.

Amelia first. Sarah if Amelia were unavailable.

Both spent my operation time weeping at the old Whitney Museum just before Renzo Piano creates his magic and builds a New Piano Whitney. I have seen a photograph of the two together waiting in front of a sign explaining Piano’s future vision, but can not find the photo. Alas.

This is unfortunate because I could then explain that while each were waiting with their iPhone ringers on in case a major medical decision was required in their capacity as my Agents, Dr. Russo figured out how to close the wound all by himself.

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One more song and then a conclusion (I hope). Brief (I hope).

http://youtu.be/uOQwdRMTKEk

Certainly, having a Living Will is an excellent idea. It is not an excellent idea when you are going into the hospital and have an excellent chance of survival. Then, having intense discussions about your wishes if you are incapacitated beyond redemption takes on an unfortunate side trip past where you want to be and what you want to talk about with your loved ones.

Here is a photo of my sister Sarah getting in shape to be my alternate Health Proxy. Did the enormous time involved in, for example, notarizing the Pennsylvania document in PA and two days later notarizing the New York document (with notarized PA) document attached and also notarized–gathering two witnesses each time. My appreciation to my Rep. in the Pennsylvania House Scott Conklin for making his office available for that purpose. [The Democrats could win the governorship with the right team. Conklin ran for lieutenant governor in the last election and lost. I hoping that he will run as a running mate with Allyson Schwartz and win.] {Whoops. I got off subject.}

A non-partisan thanks to Lorrainne Katt, Manager of the American Cancer Society’s Hope Lodge where I lived with Amelia, my daughter, as my caregiver. Lorraine in short order assembled a notary, another witness and signed the document herself.

This is Amelia several months ago drinking happily in Spain.

Amelia arrived in New York on Monday evening in time for the rules instruction at Hope Lodge where she took up residence as my health care provider that evening. The next day we…The following day, a meeting with Dr. Paul Russo, my surgeon, a wonderful physical therapist, and an intense examination to make sure I would not die under the knife–intense.

Then…Thursday brought the surgery. Would never have discussing all the paperwork have helped me through time that followed the operation. Absolutely.

++++

Another unrelated photo courtesy of the Morgan Library and Museum:

++++

A man’s gotta do what a man’s got to do.

I am thinking of me in this role. Filling out a Living Will is certainly a grown up thing to do. It is not a good idea to leave family and loved ones guessing about one’s intentions. The best way to do it is when there are no health issues involved. At nearly 66 years old, I should have been grown up enough to fill out the farm during a pacific time when asking family and loved members their thoughts did not bring out the intense emotion this exercise did.

Perhaps, the lesson of the angst of the Living Will taught me how to be a grown up. Perhaps.

Before Arlo Guthrie sings all the words to Alice’s Restaurant, I would like to thank Law Depot www,lawdepot.com This online service provides forms that fit the requirements of the PA Living Will form and NY’s Health Care Agent form. Each can be easily modified or modified only to include names and addresses. A great service.

March 10, 2013, State College, PA., 7:40 PM. I was asked this afternoon why I nearly went crazy before each of my daughters was born. The lapse of judgment—mentioning Raquel Welch to my 22 year-old daughter this afternoon—is a good example of why I worried about becoming a father.

As anyone who is a parent knows, it does not matter what we say.

What matters is how we behave.

If I behave as a father should behave—instead of telling my daughters what to do and then provide an opposite example—then my poor behavior condemns my status as a Good Father.

Hence, regard this confession of the error of my ways (and the circumstances surrounding it) when I made mention of the film Kansas City Bomber to my daughter this morning (over an often clear Skype connection). A movie review of sorts is contained within this plea for forgiveness. Mea culpa.

The stimulus for my poor behavior is the fact that Amelia, who is currently teaching English in rural Spain, is training to be a roller derby contestant.

My daughter Amelia in her Spanish roller derby You Tube debut

Sadly, this video is no longer available.

You will clearly recognize Amelia at the end of the video. She is haming it up holding up a sign that reads “500″ and then getting knocked off her feet. Just goes to show what a fine woman I raised her to be.

I had been reading Amelia’s postings in Spanish on Facebook—Spanish sadly being a language I do not yet speak nor read. The Bing translations are dreadful (compared to Microsoft’s competitors in this emerging software market. (Microsoft, which owns Bing and also owns and does an excellent job with Skype, appears to take little effort to improve; I have asked Bing).

The gist of one such posting was that Amelia complained that the only area of her body for which protection is unavailable is her ass—the idea of strapping a pillow to it had not yet occurred to her.

I had not realized until this morning that Amelia is in training to be a roller derby contestant. Until this morning, the only thing I knew about the subject was a dimly remembered fact that Raquel Welch had been in a roller derby movie widely publicized decades ago which I refused—at the time I was a film snob–to see.

So, the first trigger to the error in judgment was the desire, as a father, who when his daughter mentions a subject on which I am a complete and total ignoramus was to pretend I knew something.

The second trigger was the vivid memory that when I was her age, a graduate of college, on my way to presumably be adult and mature, I became obsessed with an oddball sport—different from Amelia’s, but given my upbringing distinctly unusual.

Unlike many of my friends and contemporaries, my memory of my past is vivid. At 65, I remember distinctly the follies I committed at 22 among them being the failure to wear a helmet while riding horses (for which I had no talent), the insistence I had in riding horses that I knew I could not control; and the frequency with which I fell—risking concussion in one instance. When, on the beach of the Pacific Ocean under an absolutely beautiful horse threatening to stomp me out of existence, I gave up being an equestrian forever (parenthetically, influencing my elder daughter Joanna to become a superb rider and trainer of horses).

It is not bad parenting to say, I neglected to take necessary precautions to prevent a concussion. Concussions are dangerous. The moral of my reminiscence Amelia not only appreciated but observed with wonder, “How did you ever survive to be 65?” [And presumably burden our country’s economic future by being both a social security recipient and a Medicare beneficiary—Social Security, Medicare, and housing for the disabled are discussed elsewhere and are indeed the theme of this site (a site one diligent reader observed is “scattershot”—connecting all postings in the site is a planned posting {once I figure out how to do it}; perhaps Raquel Welch is on Medicare and would appreciate a well-positioned grab bar].

Now for the movie review. The movie, Kansas City Bomber was released in August of 1972 at the same time a white horse stomped me into abandoning horseback riding permanently. The 1970s were a pathetic decade during which undergraduates were jealous of people like me who went to college in the tumultuous 1960s. Some reacted by pretending it was the 1960s still; others wore bell bottomed pants wide belts, ghastly ties or longer skirts; still others became Watergate junkies. By and large the 1970s was a very boring decade.

Raquel Welch was listed as the most desirable woman of the 1970s by Playboy readers. Wikipedia defines Raquel Welch’s profession as “actress and sex symbol.” She was not a good actress. Kansas City Bomber was part of a wave of films about offbeat sports. I had not heard of roller derbies until the movie was released (three months before Richard Nixon won re-election by carrying every state in the Union except Massachusetts).

Having made reference to Kansas City Bomber, I rented it this afternoon on Amazon and with great difficulty (washing many dishes and performing many chores while stopping and starting) reached the conclusion.

Kansas City Bomber is of one of the worst movies ever made. For aficionados of the movie review genre, I hereby make the declaration that if you are worried about my spoiling the plot for you (not that there is anything in the plot that can be ruined), stop reading now.

Clearly Raquel Welch is an attractive woman—far more attractive in still photographs then when she is actually moving. There is, to my point of view, nothing wrong with a father saying that sex between consenting adults can be pleasurable. But, I can never imagine making love to a woman who is chewing gum—which Raquel Welch does constantly throughout the movie and I suspect throughout life. (Now that she is 73, I wish her well, hope she does not have dentures, and hope she continues to enjoy chewing gum.)

The Riedell Skates Company would be advised not to mention the movie in any of its promotional literature. Kansas City Bomber depicts roller derbies as a sport in which the results are fixed, there is little skating and a great deal of fighting. The owner of the primary team for whom Raquel Welch (KC) plays encourages attractive women to fight each other. There is nothing at all erotic about the movie. KC and the owner have an affair, but there is no nudity and the kisses are bland. Bland kisses. At one point, KC is reproved for using the word “hell.” The minimal amount of profanity is so limited the film would probably receive a G rating today.

The most interesting (and shocking to me) scene is when KC, who has two adorable children, roller skates with her daughter during a transition period between beating up women on roller skates. The two skate beautifully on astonishingly smooth concrete given the distressed neighborhood she calls home. The shock, her daughter, age 8, is not wearing a helmet even though the danger of falling on her head is ever-present.

Dear reader, I will now attempt to make this site less scattered by focusing on the housing problems of disabled and elderly individual (primarily, Baby Boomers like me, whose karmic future may be decided by whether they voted for Raquel Welch as the most desirable woman in the 1970s).

Note: The photographs here are of Raquel Welch and I assume they are in the public domain. If not they will be removed.

My grandfather played the saxophone and clarinet in the orchestra pits of movie theaters (many of them great palaces) to entertain audiences when the silent movies were playing. His name was Salvatore Pellecia.

My mother, a Hebrew school teacher, named me after him—translating “Salvatore” into “God helps” and then debating between “Joshua” and “Joel Ezra” names which in the Hebrew she decided meant the same thing.

Some photographs take on special meaning. In my life, this portrait (in the same frame) stood on my mother’s nightstand and chest of drawers for the entire time I knew her—a time which ended a year ago next week according to the Hebrew lunar calendar (which marks periods of mourning and remembering the dead) as my synagogue Brit Shalom, here in State College, reminded me in a note: Time to say Kaddish for your mother.

When Mother, Miriam Pell Schmerler, died last year, her possessions were put in boxes which my younger daughter Amelia unpacked tonight as I watched her over a Skype connection between State College and the University of North Carolina at Ashville where she is completing her senior year.

This portrait was the one thing I wanted most and Amelia scanned it and sent it to me—the only photograph I have ever seen of him.

The rear of the photograph, which before I was born had never left the frame, revealed the information that it was taken at the State Fair in the summer of 1916 in Kewanee, Illinois.

It is only when we have the courage to face things exactly as they are, without any sort of self-deception or illusion, that a light will develop out of events by which the path to success may be recognized.

–The I Ching or Book of Changes, Wilhelm Baynes edition, Princeton University Press

LAST YEAR’S GIFT

You are the last in line.

It is a short line to be sure,

but the sister in front of you requires much.

We all require much.

“More” is the single Oliver Twist word

that dominates reality.

You require more of me more

of me as a father

and as the image of what a loving man can be, should be, might be…

I am flawed flawed,

flawed, flawed.

My health is often precarious,

my energy limited,

my money gone,

my friends exasperated, tapped out, and overwhelmed,

my career prospects tarnished by the deficiencies of my past.

But I have a fast scooter

with two drop-in batteries that are fully charged.

“Speedy Solkoff” (as I fancy myself called) scooting through the streets of

New York City

that can do wondrous things for my lame image.

Your mother and I decided to have you

or our conception of you

after the pathologist said I had cancer for the second time.

You were to be our commitment to life,

a reason for keeping ourselves

attached to the future at a time

when the past was hard and the present harder still.

You were born two months too early

stubbornly refusing to breathe before the nurses.

Later, relieved of your heart monitor

you crawled out of your crib

months before the nearly perfect model established by your nearly perfect sister

I thought, in darker moments, that Joanna would pour into you

the effort we had poured into her.

She would carry the tradition your mother and I had created;

her first steps would be

metaphorically, if not actually,

your first steps.

She would irradiate in you

the joy we had irradiated in her.

Hah. Double hah. Whatever I thought, I thought wrong.

I did not realize you were a second child with first child needs

no sister could satisfy no matter how Machiavellianly-perfect she

imagines herself to be.

You did not turn out as I had expected (aimed)

and I am glad.Somehow, you have become an embodiment of Zen archery wisdom.

You also did not get the gifts you deserve,

but, at least, I have a fast scooter

and the promises such speed can bring. Zoom.

I imagine you saying to Joanna,

“Of course, I am Dad’s favorite”

as a method of making smoke come out of Joanna’s ears.

Of course, you are wrong. You are not my favorite.

Nor is Joanna my favorite.You are, instead, locked into a contest for love

In Africa, lion after lion fell before the Colonel’s artillery.Rhinos, hippos, antelopes, wildebeests, and all manner of game were struck down, helpless as Democrats.When a skeptical George Creel asked one of Theodore Roosevelt’s guides how the former President, “blind in one eye, and myopic in the other,” could hit any of the animals that he accumulated on his safaris, the guide explained that when the Colonel leveled his, three other guns were also leveled, “ Mr. Roosevelt had a fairly good idea of the general direction, but we couldn’t take chances with the life of a former president.”

—from America Enters the World by Page Smith

Difficult

You are difficult.

You are difficult.

Just because I love you…

Just because….

You were named Joanna

during the eye of a hurricane.

Your name meant passion.

You became the center of our lives.

I remember driving around Washington listening to your fetal heartbeat.

Tick.

Your Mother carried you inside her to the Great Wall of China,

the only humanly crafted object one can see from outer space.

Watching Diana win over the Chinese–winning slowly and persistently–gave a sense of your mother’s

power and talent.

Diana received for excellence a US Department of Commerce specially minted coin presented by

the Sectary of Commerce himself.

My life also became less interesting.

Remember you were the show.

We wanted Amelia because we so much admired your performance, we wanted more.

More?

I see you on the grounds of the National Arboretum.

You have a large ball in your hand

and are wearing an endearing look caught–as a perfect image.

Why are all the photographs we make of you perfect?

Were you an error-proof model in a previous life?

You are too close to me to write about you clearly.

I love you too much for dispassion.

I am who I am–the fellow who is there for you when you are about to trip.

I am the fellow who anticipates danger and attempts to avert it.

Why is it the father-daughter/parent-child language’s sentiment is so sugary sweet in its

sentimentality?

We both admit that we love each other.

Does that mean we are members of some special covenant?

You are quiet with me; you are angry; you are accusing, you are a number of words and paragraphs ending with the encoded words “and I’m glad to see you.”

The following appeared in Brit Shalom of State College, PA’s quarterly publication The Center Scroll, January/February 2011

Teach It Diligently to Your Children

I remember clearly that astonishing first visit to the obstetrician, the one where I saw for the first time a sonic image of my first child inside her mother’s womb and heard the heartbeat. This was over 26 years ago and I remember it as clearly as if it were happening right now between the strokes on my computer keyboard.

I brought a cassette tape recorder to the obstetrician’s office and from then until Joanna’s birth, I rode around Washington DC where I lived for 17 years and where I often drove with the kind of automatic pilot that comes with familiarity. While the automatic pilot was driving, the rest of me was listening to the sound of life, primitive and vital coursing through the internal consciousness of my mind.

The heartbeat sound was surprisingly fast. There were times I heard it and remembered with clarity the sonic image of a creature who swam and looked like a frog and who would shortly be my child—the person whose umbilical cord I would cut.

What could I teach such a person? How could I flaws and all (and I was often overwhelmed by the specificity of my flaws) be a father commanded to teach, commanded to teach it diligently, commanded to teach what? This much I knew. After years of repeating the phrase from the shima, in Hebrew and in English often-multiple-times-a-day that God was not simply commanding me simply to teach my children the story of the Exodus from Egypt–unless you regard the deliverance from slavery a story that transcends that specific historic occasion and becomes a story of the universal quest for freedom and holiness.

It is germane that I have always been perplexed by the words of the havdalla service at the end of the Sabbath, lighting the multi-wicked candle, smelling the fragrence, consuming the booze (my stepfather preferred substituting 120 proof slivovitch) and recognizing that we were marking the difference between the holiness of the Sabbath and ordinary quality of the rest of the week. “Hamavdeel bein kaddish lechol.” How can we make such a distinction? Isn’t everything holy? Is there really a dividing line?

Fortunately, I no longer have to worry about being a good father—not with the intensity that drove me to drive sometimes aimlessly through the streets of DC listening to the heart beat, wondering whether I would measure up to being a good father. It is not that Joanna is 26 and Amelia is 20. We parents know that there is no end to being a parent.

I am, of course, gratified that my daughters have read Hemingway, believe strongly in the majesty of the 14 amendment of the Constitution of the United States and of the promise The Rev. Martin Luther King, Jr. standing side by side with Rabbi Abraham Joshua Shmuel Yosef Agnon(a great theologian in a century of great theologians), gave us—a promise of equality and the perception that no one is free until all human beings are free.

But what about being Jewish? Did I teach Joanna and Amelia what it means to be a Jew? For me especially being Jewish has been very complicated. As I contemplate the recent death of my mother Miriam Pell Schmerler, who was a Hebrew educator, I understand that some Jewish issues have always been clear and simple (as clear and simple as it is possible for Jews to let things be):

1.We Jews are a very old people. According to The New Oxford Annotated Bible, “Most scholars agree that the texts now found in Genesis began to be written down sometime after the establishment of the monarchy in Israel in the tenth century B.C.E.” These documents were part of an oral tradition that traces back farther than history itself. We are not only an old people; we are a clan; landsmen, people who have an obligation to each other and the world too often obscured by disagreements less important than they seem at the time.

2.Theodore Herzl was divinely inspired when, after witnessing the Dreyfus trial in what was believed to be progressive France, Herzl concluded that our people require a Jewish state located in the holy land. Today’s Middle Eastern problems may seem insoluble, but in my lifetime I have seen the fall of the Berlin wall, majority rule in South Africa, and a palpable harmony in Northern Ireland to the point where Joanna spent her junior year abroad in Belfast and her parents did not fear for her safety.

3.The revival of the Hebrew language was one of the great miracles of the 20 century, accomplished despite opposition by the Orthodox community which stoned Eliezer Ben-Yehuda and his children for speaking God’s language outside the synagogue. Not only is the majesty of the Hebrew language in the Bible—our book; we are the people of the book—better understood today than ever before. But a new, vital language has sprung up in Israeli soil. Nobel Prize committees sometimes err in their choices. The awarding of the Nobel Prize in Literature to Shmuel Yosef Agnon for using the Hebrew language to demonstrate the human ability to communicate on the highest level can be compared equally to the award to William Faulkner, kindred souls despite worlds of difference.

4.Being the “chosen people” means we have been chosen to have an often confusing relationship with God. I have been reading James L. Kugel’s brilliant How to Read the Bible. Kugel, a former Harvard professor of Hebrew, reconciles modern Biblical scholarship, which has done so much to make the Bible accessible, with traditional Midrashic interpretation, ending in about 200 AD.

Kugel says the following about God: “As for where He is normally, He is simply elsewhere, behind the curtain of everyday reality, but from time to time He crosses into the world.”

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"The demographics of baby boomer aging over the next decade foreshadow great economic, political and cultural changes that could overwhelm many developed countries," said Richard Behr, founding director of the Center.

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PARF represents the Commonwealth's premier facilities serving individuals with physical, mental, and emotional disabilities. Traditionally, the highlight of the disability community is the annual conference at the Nittany Lion Inn at the Penn State campus